Help Harriet

We had not heard Harriet`s voice since her Tracheostomy operation at only 6 weeks old, the only way we could be alerted if Harriet was in distress or needed us, was with her machines .

Over the course of the last 20 months the one thing we had really pushed with the consultants, was to hear Harriet`s voice, we wanted to hear our little girl cry or simply make some sort of noise in order to for us to know that she was happy or sad .

Harriet had been referred to the Ear nose and throat department at the Queens Medical Centre in Nottingham for an assessment of her throat and airway.

We finally received the letter and took Harriet along to the appointment, the specialist put a camera down Harriet`s Tracheostomy to make sure that there were no obstructions and that her voice cords were still intact. The ENT consultant said that everything looked fine and that he was happy for Harriet to try a speech valve, but this would need to be done in the presence of a speech therapist, but she was not in the hospital at this time and therefore we were unable to proceed any further.

As we went home from the hospital with Harriet, we were both very disappointed that the speech therapist was not present during the appointment and now knew that we had to wait for the hospital to contact us in order to arrange another appointment.

The following day we received a phone call from the hospital to say that they could send a speech therapist to our house, but a Kite Team member from the Derby hospital would need to be present, as there could be complications.

A few days later the speech therapist and our Kite Team lady Rebecca, came to see Harriet with the speech valve, we were both very excited but at the same time very apprehensive as we were not quite sure how Harriet would react to the speech valve.

Initially Harriet was a little agitated and we therefore had to wait until she calmed down, we had the oxygen on standby and made sure that Harriet`s oxygen levels and heart rate were at a good level for Harriet .

Harriet`s thermo vent nose was removed from her tracheostomy and then the, Passy – Muir  tracheostomy  speaking valve was placed onto the front of the tracheostomy .  Harriet`s voice suddenly came to life it was very emotional, our little girl who had been silent for nearly 20 months was now able to make some sort of sound, even if it was only for a few seconds .

The speech therapist said that Harriet was only able to cope for a few seconds a day, due to the amount of effort required to make sounds .

We were given the speaking valve and told not to put this onto Harriet`s Tracheostomy more than once a day and then it would be best to stick to 15 – 20 seconds at a time .

 

The following day we both wanted to hear Harriet`s voice again and decided to get all the equipment ready including the video camera as we could play it back as many times as we liked and this would not affect Harriet .

As the speech valve went back onto Harriet`s Tracheostomy, she suddenly started to make noises again,  it was great to hear her voice, but we were both conscious that we did not want to put Harriet in any danger and only had the speech valve on for a few seconds.

It was very over whelming to here Harriet`s voice and wish this could only be more permanent.

A YouTube of Harriet with the speech valve can be seen on Harriet`s channel   Here!

 

Mum and Dad

We would like to say a big thank you to all those at Impact Marketing in Nottingham, for raising £390 towards the Help Harriet Trust .

Mum and Dad

Harriet had been really struggling to get out of the house for hospital visits since her spinal operation in September last year as her seating in the car was simply not suitable for her any longer.

We had seen specialists at the Derby wheelchair services, back  in August  2010 about the possibility of Harriet having an adapted bespoke pushchair or some form of wheelchair, but at that time they were unable to help us as Harriet`s spine was severely curved.  The wheel chair services did say that at some point we would need to think about changing our car for one that had wheelchair access.

Over the Christmas period we decided to look for a car that was geared towards disabled children and had wheelchair access, there were simply lots of different types of vehicles, but all were extremely expensive.

After lots of research we found the ideal vehicle at the Jubilee Automotive Group, the company specialise in disabled vehicles and had a modified Renault traffic sport, it had the ramp, the wheel chair fastening points, the space and an electric point for charging Harriet`s suction machine while travelling .

The vehicle was alot of money, but all we cared about was giving Harriet and the rest of the family a better quality of life, we sold our family car and took out a loan to purchase the vehicle.

It was great to get the new vehicle, it was very large and took some getting used too driving, but it was definitely worth the wait and now  really wanted to see Harriet inside.

After postponing several appointments at the wheelchair services, we were finally able to go and get Harriet molded for a bespoke wheel chair.

We arrived just before 10.00 am this morning, Harriet had been a little poorly and the fact that we were not able to fasten her into the car had worried us, but we were glad we had finally made the appointment.

After some initial questions about Harriet and what our requirements were, Harriet was placed into a bean bag type mould, which was shaped to her body form in order to keep her inline and comfortable when travelling in the car. It took about 35 minutes for the technician to create the mould and then we were able to take Harriet out and place her back into her push chair.

We then chose the type of pushchair/wheel chair, that would not only hold Harriet, but also all her medical equipment.

The people from the wheel chair services were great, they told us that they would now make the mould for Harriet`s travel system and that we should be able to take delivery in about 4 weeks.

It was a relief to now know that Harriet would not only be travelling in safety once this arrived, but she would be comfortable.

 

Mum and Dad

We would like to thank Derby County manager Nigel Clough and Players Robbie Savage and Shaun Barker, for taking time out before their match against Millwall today, to show their support for Harriet.

Jason and Lesley

A week before Christmas Harriet had been suffering from increased secretions, to a point whereby she needed regular suction throughout the day and night at 15 – 20 minute intervals at best. We asked the kite team from the Derby Royal Hospital to come out to see Harriet and take some samples from her tracheostomy that would then be tested for bugs at their labs.

The hospital results came back to us four days later, Harriet had contracted a bug that was causing the increased secretions and therefore required an antibiotic called Flucloxacillin. We were extremely concerned about Harriet going onto this antibiotic as she had previously blocked off and nearly died at the Derby Royal Hospital only a few months after she was born, due to her secretions becoming hardened in the tracheostomy.

Harriet has complex neurological problems and  is unable to swallow and therefore receives a medication for her secretions which is called Glycopyrronium, the medicine is administered three times a day with some of her other medicines through her NG tube and has given Harriet a better quality of life .

When Harriet picks up a bug or infection, then her secretions start to spiral out of control, the Glycopyrronium is no longer effective and Harriet needs suctioning around the clock to keep her alive.

We had previously warned doctors at both the Derby Royal Hospital and Queens Medical Centre in Nottingham, that Harriet had previously had a severe reaction to the combination of Glycopyrronium and Flucloxacillin. It seemed that none of the experts could explain why Harriet`s Tracheostomy would block off to a combination of these two entirely different types of medicines, but took on board what we were saying and removed the Glycopyrronium in order to continue with the Flucloxacillin and a new Hyoscyamine secretion medicine patch was added to help control Harriet`s secretions.

In the build up to Harriet`s spinal surgery, Professor Vyas from the Queens Medical Centre in Nottingham requested that Harriet would now need to go onto a new antibiotic called Azithromycin, this would help control bugs around Harriet`s chest and help maintain her immune system . Harriet`s consultant Neurologist Dr Whitehouse, also from the QMC, put Harriet back onto Glycopyrronium as her secretions were becoming too much for us to manage.

Harriet seemed to get on well with the new combination of Glycopyrronium for her secretions and the prophylactic dose of Azithromycin antibiotic for months, but it seemed we now had very little choice but to give Harriet the Flucloxacillin, if we were to treat the bug she now had.

The first few days we were very apprehensive, Harriet was not particularly looking over poorly, but the combination of the two medicines was having an effect on her breathing patterns, which we monitored very closely. Harriet initially did not struggle with the new Flucloxacillin and we were very pleased with the initial results, the secretions started to calm down and it seemed that Harriet was making a good recovery.

On day three Harriet`s oxygen levels started to drop to the low nineties, which was simply not Harriet, we knew that there was a problem and started to give Harriet nebulizers to slow down the effects of the antibiotic. This seemed to work well and with Harriet`s oxygen levels were now in the high nineties and we were able to get some sleep.

Harriet started the night off quite well, but from 3.am this morning onwards her oxygen levels started to drop to the low nineties, her heart rate was also increased and Harriet was simply very unpredictable.

It was clear that we were now not going to get a good night’s sleep and randomly kept checking Harriet`s saturation monitor, it was still not perfect but had not dropped to the dangerous levels and we simply thought Harriet was having a minor reaction to the antibiotic .

Harriet`s monitor suddenly started to alarm and then stopped, this woke us both and we ran over to see if she was alright, Harriet`s breathing sounded terrible and the dark days of the crash team running into the puffin ward room at the Derby Royal Hospital to revive Harriet, came flooding back to us .

As we tried to suction Harriet`s Tracheostomy, we found that it had become blocked, the catheter simply could not get passed and Harriet was unable to breathe.  Harriet’s monitor suddenly started to alarm again, her oxygen levels were plummeting and Harriet was now in real danger.

It was 6.18 am and we now had to do an emergency Tracheostomy change or Harriet would die, an ambulance would simply take too long to arrive.

Harriet was becoming more and more distressed as every second passed, we opened the emergency Tracheostomy box and got the replacement Tracheostomy, tape, gel, scissors etc... and started to cut the tapes from the old one. As we went to insert the new Tracheostomy Harriet started to panic, we knew that if we did not get the new Tracheostomy in Harriet`s neck, that she would be dead within minutes.

After three attempts we managed to get the new Tracheostomy in and Harriet`s airline was now clear, her monitors stopped alarming and now showed that her oxygen levels were returning to normal and that her Heart rate was also starting to come down.

It felt such a relief to know that we had both saved Harriet`s life, but at the same time realized that Harriet still had to finish the antibiotics before we were able to get any real restbite .

Harriet`s Tracheostomy is usually changed once a week to try and avoid this type of life threatening problem from occurring, which usually happens with very little warning.

We have now decided to change the Tracheostomy every other day until the course of antibiotics have finished, in order to try an avoid this from happening again this week .

2010 has been an extremely stressful year for Harriet and us as a family and although Harriet has overcome some major hurdles, we are always vigilant and never take anything for granted.

We hope that 2011 will be the year in which we find someone to transplant the stem cells collected from Harriet`s new brother Michael and  Help us to Help Harriet .

 

Mum and Dad